mental illness

Many many years ago, when I was a very mentally ill young man, I was sectioned for a week. That week of sectioning happened to coincide with Audioslave playing, and I had tickets to go with my partner. I could not go. I gave the ticket to his best friend, and the two of them went, and I stayed in the hospital.

At nearly 2am I got a phone call. Not a voice I recognised, or rather, not one that I recognised on the phone. A voice a bit knackered from singing a set, but still full of crackly good humour and encouragement.

My then-partner had got backstage, found Chris Cornell, and Chris Cornell’s response to “Actually, my partner was meant to be here, but he’s been sectioned” was to phone me and say hallo, to tell me to keep my chin up, trust the doctors, take my meds, and to reassure me that I was doing the right, responsible thing. Apparently he did that a lot – Just generally encouraged his fans to look out for their mental health.

A couple of years ago, Terry Pratchett died. He was an old, old man and it wasn’t a shock to anyone, not least to PTerry himself. I still get a bit misty-eyed reading The Shepherd’s Crown, but it’s with the acknowledgment of a life fully lived, that reached its close, and thus ended.

As far as anyone can tell at this time, Chris Cornell made his own way out. He was fifty two.

If Chris Cornell, who was grounded enough fourteen years ago to be able to chat to a suicidal stranger and make them feel like they could keep going, who had all the money and physical health and ability to access treatment that’s available in the world, who had all the biggest, loudest, most amazing distraction techniques available to him, who spoke up for years about what it was and how to face it head-on, was still killed by the terminal illness that is depression, what hope do the rest of us have?

I have more to write about. I’ll write later. Today I want Soundgarden and a nice wool blanket and to go back to yesterday and somehow persuade someone to ring Chris Cornell right after he finished playing his set.

Well, in two days I’ve got Stanmore, again, which I’m trying to look forward to. Going to try to do it in one day again, and to try to get as much out of the single appointment as possible – If there is a second appointment, I probably won’t be able to afford to get to it, even with the disabled person’s railcard.

Just failed another Mod 1, so am about to take on the eighth attempt in December.

The kitchen ceiling is dripping in three places, and the bedroom wall has filled up with black mould because the outside downpipe has broken. Heating repair is coming on Monday, gutter repair was supposed to be today, but I’ve heard nothing yet.

I had to fill in a reapplication for PIP, which arrived on the 3rd of October and was due in for the 3rd of November. I got it sorted eventually, but it took me ages and again there’s something cripplingly embarrassing about having your best friend and their Mum both doing a close-reading of exactly how you wash your hair and feed yourself and wipe your arse. Was frankly mortifying to realise how antisocial I am now; How much I don’t like to see, or talk to new people, and how much it’s getting worse. It wasn’t that long ago, in lifetime terms, that I used to willingly go to societies, and parties, and to find value in meeting new, interesting people. My attempts at such this year turned pretty quickly into realising “I like the swimming, but I wish there were no other people” or “I like riding, but I wish I was the only person at this biker cafe” and, well, I’m not sure if that’s mental illness or just utter disillusionment with all other people. Anyway, it’s been coming on for a few years, but now other than Dearest and Best Friend, I’m a complete hermit, and even seeing them is a little exhausting.

In good news though: I’ve been swimming a couple of times, I went to Harrogate and got myself a nice lambswool jumper and a load of buttons, and my lacemaking is getting on a bit.

All I really want right now is to be out on my bike, or to be curled up in the warm with someone lovely, or just in general for it to be not this week at all.

You may note I’ve not been posting much this year. That’s because my usual reprieve between dips of seasonal badness didn’t happen. And now it seems to be getting worse again.

I’ve not had this kind of seriously long-term acute-low since my teens and early twenties (where admittedly I was stuck in an acute low from 1993-2007) and the worst long crash since then was 2009-2010, where I was off on the sick for months on end for depression alone. But this one has been getting slowly worse since about Oct 2014, and this is the first year with no energy boost in Spring-Summer at all in that period.

I am not looking forward to this winter.

I am also not looking forward to going to Stanmore on the 3rd of November at 2pm for physio, since I don’t have the money to do it comfortably, so I’m going to be likely to be doing a round-trip to London in a single day, on an ailing 125. I don’t even feel like I have any hope to gain from being treated, since so far nothing has worked much at all other than giving me morphine and hard exercise, and I don’t feel like I have the strength to phone Stanmore and tell them that I can’t make it – I can’t even afford it – and that I’m very sorry for having wasted their time. I’d not even been expecting the Stanmore invitation – I thought I was going to have services provided at home. But this will be the best physios in the country. And thus I’m conflicted.

Started off with the social workers, which was just awful in its own right. As much as they say that it’s all up to me what happens and things like that, I feel like I’ve been sort of trammelled into things.

The vague plan so far is that I will get a “Direct Payment” into a “Managed bank account” – Meaning that I will not see the money, so I won’t be frustrate and resentful that I’ve “got money” that I’m not allowed to spend on things that’d immediately help me, but only on specific help that other people think that I need.

It was a key point of mine that I resent the sense of people meddling in my affairs and telling me what to do. I know that, logically, the same thing is happening, but if I can ignore it, I won’t give increibly long lectures to anyone else about how it’s patronising to have a fixe budget for my care, but to have someone who is not me deciding that I absolutely need a personal assistant more than, for example, new brake pads, or a bigger light therapy light.

From that, we got to actually deciding what I needed. Broadly speaking, the plan was to have someone arrive at about 9.30 or 10 to wake me up, rearrange the bed into a “sitting up to work” posture, make me a cup of tea and a flask of soup or curry to put by the bed for dinner, then leave again. They’d then come back in the afternoon if needed, to empty the urinal, possibly sort me another snack, and give me a hand doing the normal household chores that I can’t do, like washing dishes or sorting laundry, or possibly on good days to do things like go to the market or set up the workbench for sewing or similar.

They then decided that I would probably need combined funding from the NHS to provide medical care, because the basic stuff that my friends do on a day-to-day basis is apparently so difficult and unusual and viscerally upsetting to the average person that they’ll need a nurse to do it. Even though I know that a nurse’s response would be “Go to A+E”. So I’m getting a nurse that also doesn’t mind washing hair and cooking and cleaning, rather than a gentleman’s gentleman who can also reduce dislocations. Probably.

I don’t want this. I viscerally do not want this level of interference in my being, even as much as I know that on a bad day, it’ll help. I worry that they’ll either decide that what I want is taking the piss, and thus withdraw support, or that they’ll decide that they want to push and insinuate themselves into being there every day, even on days where what I want to do is be out and away. I do not enjoy the company of other people, and I worry that there’ll be an implied contract to be friendly and make small talk, which I am not good at. In total, they were here for over three hours, and it was exhausting and upsetting.

And then yesterday evening I ended up gong out to a new person’s house and, for assorted reasons, having a horrible panic attack that resulted in me riding up to Best Friend’s house at midnight and collapsing onto the settee in his living room and wibbling and making depressed, terrified noises until I was calm enough to get back onto the bike and ride back home. I was still paranoid enough that the taxi that decided to follow me three quarters of the way home, two inches off my back tyre, really put me further on edge. As much as my acceleration was better, I wasn’t willing to break the speed limit, but he was – So he’d shoot up to fifty to catch up, then slow down to thirty again when he was completely filling the mirrors. Considering that I took an insanely convoluted and little-used route, he was definitely doing this for “fun”.

On the other hand, driving across the city in the pitch black, with half the streetlamps out, and barely any traffic, as the ground frosted over and the sky cleared to reveal millions of stars, with the view out over the valley as I got nearer to home… That was nice. That was worth it for the whole rest of the shitty day.

Today I’m in pain. I’ve got a short deadline that I’m not going to make, my tutor hasn’t responded to my email asking for an extension, my legs and shoulders and neck hurt in a way that suggests they’ve been too tense for too long, and I’m just not feeling great at all.

This one’s not something that I ever really talk about, but I have a real problem with clothes.

This may seem ironic coming from someone that sews their own, but there it is. Effectively, on a disturbingly regular basis, I don’t know what to wear. Not just the fairly-normal “I don’t know whether to wear jeans or cords to this event, since I don’t know how formal it’ll be” but ranging from that right up to “I know I have to leave the house, but I don’t know how to even start thinking about getting dressed.”

It’s weird.

I’ve got, in efffect, two “wardrobes” – One of them is fairly modern, skewed towards goth just because it’s on me; T-shirts, army surplus, fleeces, one pair of jeans, and the other is the stuff that I’ve made and the things that go with it; Suits, trousers cut in a slightly Victorian fashion, collared shirts, waistcoats. There’s not a formality or practicality difference between the two – I’ve got slobbing-around-the-house-to-be-seen-by-nobody waistcoats, and t-shirts that I only wear when I’m really trying to impress – so I suppose the first hurdle is always “Which wardrobe do I pick from?”

Even in the absence of that, when I know that today is definitely a modern dress day, or definitely a made-it-myself day, I usually don’t know how to get dressed. I spend so much time in pyjamas and a norgie that wearing anything beyond that is stressful; What will people think of me, wearing a T-shirt and jeans? I’ll stick out like a sore thumb and look like a slob. What about in a waistcoat, where people will think that my cane is an affectation to look eccentric? How do I button up a collar, will it look wrong without a tie? If I wear jogging bottoms, where will I keep the things I normally put in my pockets?

This all gets worse once you start trying to also account for the weather – I genuinely have to be reminded to get a coat, because I’ll be cold. My friends are proud of me when I independently remember to wear gloves, or underwear, and in summer they’re even more proud when I manage to do something – anything at all – other than lie around in the house naked and ignoring everyone.

Then it gets worse again – if I’m going somewhere with someone else, what will they be wearing? I don’t want to look like a total scruff next to them, or look pompous, or, worst of all, match. Especially if that’s matching-and-both-looking-eccentric, which is basically always a likelihood.

Somehow, I find this all much more embarrassing to talk about than things like, for example, micro-enemas. Most of the time I would literally rather share graphic details of putting things up my own arse in an attempt at removing a few kilos of faeces, than talk about how I have managed to get to thirty without knowing how to dress myself reliably in the mornings.

It was easier when I worked in a lab. I had a pair of assault boots, a pair of steeltoed boots, six or seven T-shirts which were identical but for the colour and logos, three pairs of chemical-stained jeans, a hoodie, and (once I got to work) a short-sleeved labcoat. They got worn in rotation, with thick boot socks and thin undersocks, and there was no question about what I needed to wear, or when to get dressed. The bus was at 8.10, I left the house at 7.45, I was in work by 8.40 at the absolute latest.

Prior to that, it was even easier when I worked for a conservation charity – Steeltoed boots, canvas trousers with as many pockets as they could hold, green T-shirt with the charity’s logo on it (one of several, in various sizes and with varying degrees of paint spatter and ingrained sawdust), and either a padded hi-vis or a barbour jacket in winter.

Nowadays, it’s just difficult. The combined anxieties of “Are my clothes clean?” “Do I look presentable?” “Will I freeze/boil?” and “Will I be ale to do all the things needed whilst wearing this?” result in a lot of days of just lying in the house in my pyjamas. When I ned to go out, I’ll usually get Best Friend to phone me and talk me through getting dressed; “Do you have a shirt on? Good. It’s cold, so you’ll want the houndstooth trousers or the moleskine ones. Do you want a waistcoat? You don’t need one, but they’ve useful for carrying stuff. Bring a wooly jumper, either way…” complete with usually one or two utter panicks on my part where I take everything back off and sit there wrapped in a duvet and saying that I don’t need to go out at all.

If there was a routine that I didn’t feel nervous about, I’d probably manage, but it clashes with so many other anxieties. Maybe I’ll just wear a toga from now on.

I know I’m not the only person who does this, but nobody talks about it.

This will probably be a bit of a disjointed post, so sorry about this in advance.

I have PTSD. It doesn’t matter what it’s from but, effectively, it’s been with me for most of my teenage years and all of my adult life. As a result of it, I am both more sensitive to traumas which are similar to my original trauma, and have memory problems.

For “similar”, consider it like this:

There is a small, blue vase with a smooth glaze and a painting of a hummingbird on it. Things which are similar to it are things which are blue, vases, hummingbirds, smooth textures, things of a similar size, hollow things, things which make the same noise when set on a surface, other ornaments which might be in the same place as a vase.

I have memory problems: My long-term memory is fragmentary at best, and there are stories within it (Usually ones which I’ve either had to repeat a few times, or which other people have told back to me) where I remember them oddly. It’s like the Princess and the Frog – The story remains the same, but it could be in the city or the country, and it could be a witch’s curse or a self-imposed exile, and the girl could be a princess already or a commoner, and she might have kept her promise or broken it, or found the golden bauble, or had it brought back to her as proof. As I’m telling a story, I’ll often have to hunt around to find out who it was with, or when it was, or where. Sometimes I’ll start telling a story which I think happened after I’d left university, then realise that it happened when I was a child, or one which I think was in Tokyo and was actually in Berlin, or which I think was with Dearest but, logically, was before I met him.

And I have flashbacks. Usually brief, usually brought about by something that reminds me of a trauma (Some physical sensations, the smell of a certain brand of industrial cleaner, a certain turn of phrase). Sometimes it’s just a bad dream. Most of the time, in fact, it’s bad dreams. Not as bad as night terrors, but they feel almost like night terrors, and I end up screaming or lashing out or sleepwalking.

Sometimes, because of it, I lose track of what day it is, or what year. Just a nagging sensation that I have to do something – Go to my Grandparents’ house for tea (Not a regular occurrence since 2003), wake up in time for work, meet someone at the club (which closed in 2010), press my uniform for school.

I actively avoid nostalgia. There is nothing for me back there, only forwards. When I feel like there’s a chance of worse episodes, I don’t listen to music at all, since the chance of getting a line stuck in my head, and it feeling a bit like an intrusive thought (Like in the vase analogy) is too much of a risk, since it can set off a full-blown episode, if not of flashbacks, then at least of depression and self-harm.

Last week, I fell asleep at Best Friend’s house in the usual fashion. The next bit that I clearly remember is being curled up with my head on his shoulder, crying uncontrollably, and whenever I raised my head for a second, seeing him looking terrified.

From his accounts;

I was “gone” for nearly an hour.

I seemed to be in my late teens, knowing what he knew of my past and the people in it.

I was freshly grieving someone who has been dead for more than ten years.

I didn’t know that I had EDS – He had to keep explaining to me that my back pain wasn’t from a climbing accident, and that my hands weren’t hurt from sparring.

I didn’t know where I was.

I wasn’t answering to my own name.

I kept looping back as if I wasn’t making new memories within that hour – Having to re-establish where I was, when I was, what was happening.

By the time I returned to myself, I was just upset, exhausted, tense all over and shaking. He relayed back to me what had happened – My screaming waking him up, him taking a few minutes to work out that this wasn’t just a nightmare, then putting the lights on and listening to what I was saying whilst reassuring me where I was, when it was, and that I was safe, reminding me of my dog, my partner, my house, my bike, the swimming pool that I loved, the things that I’d made and done since the last year that I remembered. I asked if I’d hurt him, and he said no – That I’d not even tried, I’d just been frightened and sad. I was relieved. If he’d said that I’d even made an attempt to hurt him, I’d have put on my boots and gone home.

Suitably caught up, he offered me my diazepam, both to release the spasms that had taken hold whilst I wasn’t protecting my movements and to settle my mind far enough that I could move forwards, and we talked about inconsequential things in the present – Casting plaster, painting with nail varnish, production lines, cricket balls, archaeology, cats. I had to sleep with the light on, and he agreed that it was wise.